High number and recovery question

[Sara789]

Hello Everyone,

I'm new to this wonderful world of celiac disease. I had my endoscopy/biopsy done on 12/23/16 and immediately started a gluten-free diet.

I'm starting to feel a little better, but am still in pain; scared about the disease's short- and long-term health and lifestyle implications; and grieving about all of this.

My tTG IgA Quantitative value for my initial blood test was >2,500.0 U/mL (Standard Range <15.0 U/mL). Needless to say that my high number is also freaking me out.  

Does anyone know how long it takes for the numbers to go down into the normal range on a gluten-free diet? I know we're all different, but I haven't found any numbers that have been as high as mine (lucky me). I don't even have an actual number, so I'm concerned that my next blood test might have the same result and I won't know if things are getting better or not.

Any insights and ideas are welcome.

Thanks,

Sara

[tessa25]

My blood test results didn't show values >100 so I'll never know what my highest number was. It took several months for my numbers to go down below 100. My numbers drop the most when I'm on a very bland diet. If you're young you probably just have to worry about keeping the gluten out of your diet. Although a bland whole foods diet would definitely speed things up. Think soups, stews, well cooked veggies (I'll give credit to cyclinglady for this phrase). Avoid anything acidic or spicy while your intestines heal.

Everybody is different but my safe foods are mashed potato soup, half the fat vanilla ice cream and chocolate drink of all things. Not the healthiest diet for sure. LOL. I've recently been able to add on American cheese on a Canyon Bakehouse bagel. But I'm over 50 and it's taking a while for my intestines to heal.

I can say that any month I had spices or anything acidic my numbers did not improve. But everybody is different.

 

[cyclinglady]

Welcome to the forum!

I am not a doctor, but I would not freak out about your high TTG results.  From my research,  antibodies do not always correlate with intestinal damage.  Experts  used to think that high antibodies would indicate high levels of damage, but it is not true.  celiac disease has been termed a chameleon disease -- always changing (Dr. A. Fasano).  

I had moderate to severe damage yet my TTG antibodies were zero!  I seem to only test positive on the DGP IgA even on follow-up testing.  When diagnosed, they were barely positive, but a glutening two years ago pushed them off the charts.  I did not worry.  My thyroid antibodies were the highest my doctors had seen 20 years ago (over 4,000, if I can recall),  but I am still alive and kicking!  

Grief is normal.  We have all been there, but I am here to tell you that it gets better.  The bad news is that it takes time.  So, expect to take a year or longer for the antibodies to drop.  Your symptoms may resolve much faster.  Focus on a Whole Foods diet and you will heal much faster (better food and less chance of getting glutened! )

Need to vent?  Ask questions?  We are here to help each other!  

[Sara789]

@tessa25 - Thank you! I'm on a whole foods diet except for some marinated artichoke hearts, almond milk, and goat cheese (all checked with the supplier to be gluten-free...fingers-crossed). I can't handle cow dairy, anything acidic, anything spicy (including my beloved paprika which I never considered spicy till now), or nuts. Having to give up cheese and nuts has been really tough since they were my go-to high-protein snacks. I haven't found any shelf-stable whole food that I can keep in my car and bag. Any suggestions? Maybe that's something I have to adjust to until I start to heal. Hopefully I can eat nuts and nut butters at some point. Mashed potato soup sounds really good!

@cyclinglady - Thank you too! I'm trying not to freak out in general. Sometimes I succeed, and sometimes I fail. It's good to know that the numbers aren't something I have to specifically freak out about. My biopsy pathology report stated that I had "partial blunting" with some "normal architecture." I'm clinging to the "normal architecture" part in the hopes that I didn't completely destroy my poor small intestines. I couldn't get a very detailed path report. Every time I asked I got blank looks. I'm just glad that I got multiple samples taken. It was hard to get my biopsy done. They wanted me to wait a month just to see a GI specialist, and then get a referral. I was feeling worse and worse, so I kept pushing and got a biopsy when there was a cancellation. Advocating is hard enough, but doing it when feeling lousy is lousy. I'll keep telling myself that things will get better. Hopefully I'll start to believe it.  

[tessa25]

49 minutes ago, Sara789 said:

@tessa25 - Thank you! I'm on a whole foods diet except for some marinated artichoke hearts, almond milk, and goat cheese (all checked with the supplier to be gluten-free...fingers-crossed).

 

I think marinated artichoke hearts are acidic. I'm surprised they don't bother you. But everybody is different. Think of it this way. If you've ever had a canker sore in your mouth, don't eat or drink anything you would not be willing to touch a painful canker sore with.

Almond and coconut Kind bars can sit in your car. But they currently make me nauseous. Too hard to digest compared to soft foods.

 

[Sara789]

@tessa25 - I only use a small amount of diced artichoke hearts in my chicken bean salad. No dressing since the marinade is enough for me. I don't eat them by themselves. It doesn't seem to bother me, but maybe I should give those up too while I'm in the healing stage? I've also read people giving up beans, but I worry about giving up the fiber.

Unfortunately I can't handle nuts right now, but thanks for the Kind bar suggestion. I'll check them out if that changes. I've liked them in the past. I used to stash nuts everywhere (desk, car, jacket, etc) so I wouldn't have to go hungry or buy anything if I needed a little something to get me to the next meal.

[cyclinglady]

Snacks?  I keep a zippered make-up case in my purse with a nut bar (still can not do almonds), squeeze applesauce, and peanut butter packets and now a shelf stable yogurt.  Most of the time I take a little cooler and keep it in the car.  If super hot, it is a cooler within a cooler (1/2 gallon milk jugs freeze well and create old fashioned ice blocks).  I have lots of pretty little coolers too to take in to places and don't scream cooler.  Those GO Picnic lunches are cool too.  I always keep a stash of plastic spoons around.  I can always grab a yogurt or something at the grocery store.  

I eat no grains or legumes (alas, I am diabetic too).  But I get plenty of fiber from veggies.  Dang!  I am roasting some cabbage right now as part of my lunch.  I tend to eat veggies with every meal.  

Soft foods are best and easiest to digest for a newbie or while recovering from a glutening.  I prepare lots of stews and soups and keep them on hand.  Gee, my kid had the flu and it was nice to have chicken soup that was fast to heat up.  

It also sounds like you gut is not so damaged (or as bad as you think).  Soon you will heal!  

 

[Gemini]

36 minutes ago, Sara789 said:

@tessa25 - I only use a small amount of diced artichoke hearts in my chicken bean salad. No dressing since the marinade is enough for me. I don't eat them by themselves. It doesn't seem to bother me, but maybe I should give those up too while I'm in the healing stage? I've also read people giving up beans, but I worry about giving up the fiber.

Unfortunately I can't handle nuts right now, but thanks for the Kind bar suggestion. I'll check them out if that changes. I've liked them in the past. I used to stash nuts everywhere (desk, car, jacket, etc) so I wouldn't have to go hungry or buy anything if I needed a little something to get me to the next meal.

Hi Sara,

     I little bit of advice from another Celiac who had extremely high tTg numbers at diagnosis and was very sick......if a food is not bothering you, then continue to eat it.  I was able to tolerate some processed foods so ate them.  I was 20 pounds underweight and needed to gain badly.  So I ate gluten-free bread with no issues at all.  I never liked spicy foods but that is for another reason.  I ate beans also and did not have a problem.  This will not affect healing time, either.

As for re-testing my numbers, I did not do so until a year had passed and at the end of the year, my numbers were in the normal range.  I never cheat and am very careful about gluten ingestion and cc. I was 46 when diagnosed also but still managed to heal well eating foods that some feel you should not eat.  Go by how you feel after trying new foods.  If they bother you, then wait a while longer before trying again.  I also strongly urge you to take digestive enzymes while you are in the healing stage.  They work very well as an aid to digestion while the gut is still compromised.

[cyclinglady]

Gemini is right that we all need to adapt our gluten-free diets around our lifestyles and health issues.  Please do not think that I am against legumes and grains.  I feed them to my family.  I just wanted you to know that beans and grains are not the only sources of fiber.  

We are all different.  You just have to figure out what works for you. 

[Sara789]

@ Gemini - Thank you for that. I've been trying to be as gentle to my body as possible so that I can heal and feel better, but I may be going overboard. I'm just really worried about everything right now. It's so hard for me to know if something is bothering me because I'm healing or because of something I'm eating due to an intolerance or hidden gluten. I gutted my kitchen to make it gluten free, and my home will be gluten-free after I completely switch my cat to gluten-free food (soon). I'm just hoping that I start to feel better and can pinpoint some of this stuff. This has been scary and expensive!

Are there any digestive enzymes you recommend? I've read so much conflicting information, but I'm willing to give it a try.

@cyclinglady - Thank you for the information. I can't eat very much at one time and I'm concerned that I'm not getting enough protein for healing and I'm having GI troubles that make me think I might not be getting enough fiber. I'm looking for a safe protein powder that might help with my protein intake. I'm keeping track of all my food, water, GI issues, weigh (unfortunately I'm losing weigh, which isn't a good thing), and other issues to try and figure this out. I'm my own guinea pig!

[Fbmb]

Hi Sara! I'm a newbie too. I was diagnosed about a month before you were. My results just said >100, so I don't know what my actual number was. Could have been sky high for all I know. I have to have them redrawn next week because I have a follow-up with my GI on the 23rd. I'm worried that it's too soon to check and that there won't be a change - and that if there's no change I'm going to feel like a total failure. 

It sounds like you eat really healthy. I'm 29 and had pretty significant damage, according to my GI. I'm hoping my age works in my favor and that I heal fast. In the last month my belly has felt better. I'm not nearly as bloated as I was before. I am only having "potty" problems a couple times a week, rather than everyday. I hope that means something. 

Just know you're not alone. And if you ever want to chat or bounce ideas off each other you can private message me on here anytime.  

[Sara789]

@ Fbmb - Thanks! Good luck on your test. Too bad we can't just study harder to get a better score.  I'm hoping my tummy feels better: I really miss wearing jeans. Right now jeans are too painful to wear, and they weren't at all tight before the celiac bloat.

[Gemini]

1 hour ago, Sara789 said:

@ Gemini - Thank you for that. I've been trying to be as gentle to my body as possible so that I can heal and feel better, but I may be going overboard. I'm just really worried about everything right now. It's so hard for me to know if something is bothering me because I'm healing or because of something I'm eating due to an intolerance or hidden gluten. I gutted my kitchen to make it gluten free, and my home will be gluten-free after I completely switch my cat to gluten-free food (soon). I'm just hoping that I start to feel better and can pinpoint some of this stuff. This has been scary and expensive!

Are there any digestive enzymes you recommend? I've read so much conflicting information, but I'm willing to give it a try.

 

These are the enzymes I used while healing:  Open Original Shared Link  I will warn you that they are pricey but all good supplements are pricey.  If you want to look for another brand that is less expensive, that is fine but just make sure they are gluten/allergen free.  Take one with a larger meal.  I did not take them at every meal because they are pricey and I really didn't need them for smaller meals like breakfast. I also took them with heavier foods until my gut healed and I could handle fats again.

Try not to worry too much and do not overthink things. Just eat healthy and really gluten free until you learn the ropes.  Get plenty of rest. Let the worry go because you are going to be fine. Changing your diet and healing naturally takes time but you will get there.  I would recommend reading this book:  Open Original Shared Link  It is written by one of the leading Celiac researchers in the US and is a very good read.  It will teach you how the digestive process works, which is essential to understanding Celiac.  Too many people do not put any amount of time into REALLY learning about Celiac and their gut function.  It makes managing the diet and lifestyle much easier.  It made me understand the symptoms I was having and why.

I am sure some of the worry and anxiety you have are Celiac related.  I never have anxiety EXCEPT on the extremely rare occasion when I take a hit.  Then  I am crazy lady for 2-3 days.    But I have been doing this for many years and the last time I was glutened was 2 1/2 years ago. I am now trying to set a personal record.......